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Ehlers-Danlos Syndrome
Websites
Offers a support, message and discussion center for NY/NJ ehlers-danlos patients.
http://disc.server.com/Indices/163893.html
American nation-wide support and information to those affected by EDS. Includes many articles, message boards, chat room, information for medical professionals, and regional support groups.
http://www.ednf.org/
A Syrian patient gives a personal plea for better medical support and research.
http://ehler.8m.com
Support for sufferers of the Ehlers-Danlos Syndrome and related Hypermobility Syndrome and provides some information for the medical profession and general public.
http://www.edfnz.org.nz
A series of short articles regarding genetics, diagnosis, treatment, and coping for people with EDS from the University of Washington's Orthopedics and Sports Medicine Department.
http://www.orthop.washington.edu/arthritis/types/ehlersdanlos/01
The newsletter for, by, and about people with the condition. Includes featured articles, columns, and contact information for support groups worldwide.
http://www.edstoday.org/
Information about EDS from the National Organization for Rare Disorders.
http://www.rarediseases.org/sear...sname=Ehlers%20Danlos%20Syndrome
Local Philadelphia, PA support for EDS and connective tissue disorders, also offers a Service Guide for Invisible/Hidden Disabilities.
http://hometown.aol.com/daddio5600/
Hypermobility can be a problem for both massage therapists and clients, AMTA discusses solutions therapists can readily employ.
http://www.amtamassage.org/journal/olcott2.html
HMSA serves people with Hypermobility Syndrome, Ehlers-Danlos, and related joint disorders with information, referrals, message boards, and much more.
http://www.hypermobility.org/
Working together to provide assistance, support and resources for people living with this rare genetic disorder.
http://www.ehlersdanlos.ca/
Learn what it's like to live with EDS for this woman and her children by following her online journal.
http://www.livejournal.com/users/edsliving/
Symptoms, diagnosis and treatment of the condition.
http://www.arthritis.org/conditions/diseasecenter/eds.asp
Eaton Hand provides a glimpse inside the hand, wrist, and elbow. Discover how your joints are supposed to work, what goes wrong in dislocations, and how injuries and ailments are treated.
http://www.eatonhand.com
Expands on NORD's information about EDS, includes great detail on symptoms and cross-over of types.
http://hw.healthdialog.com/kbase/nord/nord240.htm
This is a moderated discussion board for Hypermobility Syndrome, Marfan, and Ehlers-Danlos. Includes personal experiences, traditional and alternative treatment, and pain management tips from fellow patients.
http://www.marge.com/hypermobility/
If you or a family member with EDS needs surgery, read this and share it with your doctor.
http://arthritisinsight.com/medical/surgery/eds.html
Research organization for genetic connective tissue disorders.
http://www.chdct.org
Information regarding laboratory testing for different EDS types. Also includes limited information on Tenascin-X Deficiency Syndrome, a recently discovered disorder that shares symptoms with EDS.
http://www.pathology.washington....agen/guidelines/ehlersdanlos.php
Doctor-produced information on the different types of EDS, including Tenascin-X Deficiency; treatments, pregnancy considerations, and more.
http://www.medicinenet.com/ehlers-danlos_syndrome/index.htm
Some EDS patients have obtained excellent results with prolotherapy treatments.
http://www.diagnose-me.com/treat/T85233.html
Serves as a window to message boards, medical articles, support groups, and other resources for people with hypermobility disorders.
http://hypermobility.objectis.net/
EDS causes many dental concerns that you, your dentist, and your medical team must be aware of. This excellent article covers the problems and solutions in detail.
http://www.cda-adc.ca/jcda/vol-67/issue-6/330.html
Explores environmental and nutritional links in healing connective tissue disorders (Ehlers-Danlos, HMS, Marfans, and others)
http://www.ctds.info/
Article by two dermatologists covers many patient concerns regarding skin, joints, blood vessels. Includes potential treatments.
http://www.emedicine.com/derm/topic696.htm
Personal site of a patient with vascular type EDS. Moon relates how she was diagnosed after one hospital missed a double aneurism - fortunately a second hospital discerned the problem before it was too late! Pictures included.
http://moondancer.150m.com/ehlers.html
Press release about the recall of Vioxx, a drug commonly used to treat EDS-related arthritis. If you have been taking this medication please contact your doctor immediately for instructions.
http://www.vioxx.com/rofecoxib/vioxx/index.jsp
The purpose of the association is to support members, to inform them and their families, physicians, dentists, other nursing staff and the general public about EDS concerning symptoms and consequences. Find contact details and links.
http://www.ehlers-danlos.se/indexEng.html